The Devastation of Mesh
As you all know I have been taking a break from mesh and all the devastation that surrounds it. This morning I went to answer comments which is something I now only do every few days, and I was struck by one woman’s long comment and I had to tell he and you all something. We have to stop blaming ourselves for the mess we are in!
We have all done it at some time. “I should have asked more questions”. “I should have done more research”. Well I can assure you I did and yet I am in the same mess you all are. IT IS NOT OUR FAULT that this happened to us. Mesh was never tested in humans. There are many papers written about what was discovered when it was used in rats and dogs and many warnings by worried researchers and physicians. But the mesh manufacturers did not care. They decided to push it through under an umbrella loop. Sadly, this is done all the time and our government allows it. They need to stop this NOW before the tolls reach gigantic proportions. Is it not enough that already thousands of women are affected by this? What will it take before this is not just a warning but it becomes a halt until further investigation happens by people who are not PRO mesh.
The women of the world obviously do not matter enough for this to change. That is why we have to tell women face to face one woman at a time.
When I read what this woman wrote I felt terribly sad for her. She is blaming herself for something she felt she should have known about. How could she? It is the duty of the mesh manufacturers to first of all not down play the serious consequences of mesh, and not convince doctors we are all a bunch of nuts that are blowing this out of proportion. WE ARE NOT! We are injured women, wives, mothers and grandmothers of the world. We have lost so much while condoning these products keep going on.
Please be aware that all mesh slings and products are doing serious damage to women and their families. Before you even think of doing this, read this woman’s story.
What I would tell her is this. YOU are not to blame. You were doing your job the best you knew how and this is not your fault.
I don’t know which State she lives in and I have asked her. I have reread this from her and there is nothing to give away who she is and therefore I want her story to be a warning to guide women away from mesh. It takes hard work and money to go elsewhere to get surgery done that you may need, and a lot of homework. But this is your life and your future. Please do not be persuaded that a doctor I quote “Does not use that mesh that is being blamed for all the injuries”. They all do this regardless that they be called ‘mini’ or whatever their name is. I hear from women with all types of mesh and they all regret that it was put into them. Please, please do your research and only go where they understand how to fix your medical issues MESH FREE!
Now read one woman’s story.
“I was such an outgoing loving life person. I married my high school sweetheart and had 2 beautiful girls and loved my life. I worked days and my husband nights. I thought I had everything! I never let anyone see me hurting, upset, blue. I was too busy being a mother and wife. I always believed that loving someone meant putting their feelings above your own. I once read a paper my oldest daughter wrote about how I was her hero and how much she looked up to me. I went to nursing school with 2 young children and a husband that worked nights. My youngest daughter told all her teachers in school that she was going to be just like her mother and go to school to learn to help others. She is now a senior in high school and plans to be a doctor. I had a horrible car accident that I shouldn’t have walked away from while I was in my last year of nursing school. I had a headache every day for 2 years before I ever went to a doctor to find out why. I used to enjoy riding horses in barrel racing and pole bending parades and trail rides. When I was on a horse I could relax like nowhere else. I felt closer to nature and closer to God on the back of a horse. I still managed while I was in nursing school to go to every basketball game and every band concert. I went to work as a nurse working post-op GYN surgery. I cared for women who had hysterectomies and bladder surgery. I believed the doctors that informed us what we needed to educate our patients with before we sent them home. I thought I was helping all those women to a better way of life. I had no idea that I was helping them to hell. I had SUI while carrying 50# bags of feed and moving 65# bales of hay. I had SUI playing with my girls and nieces on the trampoline. I had SUI while riding barrels and poles on horseback. I finally after 6 years of putting it off because there was something else more important to do. Something else that needed my time more than I needed surgery. When I finally decided to have the surgery I told my family it was this wonderful new procedure that was outpatient and I knew everything I needed to know about the procedure and the recovery. Immediately after the surgery I developed these horrible painful bladder spasms. I was told by my doctors that it might be a bit tight but it would loosen up some and they would subside. I dealt with this in silence believing what I was told by the doctor I trusted to deliver my 2 girls, tie my tubes, perform my hysterectomy and now my TVT sling operation. I have a really hard time speaking about all my health problems and don’t want to be a burden to anyone. I have never really sat down and talked to anyone except my spouse. He understands but doesn’t want to sit and dwell on the bad so talking to him is hard. I have tried many times to talk to him and though he is one of the most amazing men on earth it seems to leave me frustrated. He tries to be understanding yet when he says things like, “you just need to get out more.” or “just get up swallow a handful of pills if that’s what it takes and get on with your day.” I have spent the last 7 years in a slow decline in my health. I thought that I didn’t bounce back from the surgery because it was the 4th abdominal surgery I had had and this after 2 babies. I was older to, 32 at the time. I have had 2 anaphylactic reactions of unknown origin and broken out in all body hives 4 times in this time. Numerous allergy tests have revealed no known allergies and no explanation for these reactions. I have developed a constant red tint to my face like those known to have lupus. I have asked doctors about this and have been told everything from it’s an allergic reaction to something to it’s just your blood pressure. I have had a headache every day since my auto accident and this has been the blame for some of my ailments. I have tried to get numerous doctors and my own family to believe me that there was something IS something just not right. I have been told I have 3 herniated disc and spinal stenosis but it’s not bad enough according to the MRI for surgery. I have had 2 different neurosurgeons tell me that it’s not bad enough to explain the pain I have. I have seen 2 different neurologists for my migraines and headaches. I have seen 4 different pain doctors in an attempt to control my pain. I can’t pee without spasms and pain. I have popped blood vessels in my eyes trying start a stream of urine or keep it going. I have had so many urinary tract infections that I lost count. I get pimple or boil like cysts and when my wonderful spouse helps me to doctor them he removes plastic like bits that were thought to be stitches that never resolved. I have excruciating pain in my lower back that radiates down my legs. I have had multiple CT scans to rule out appendicitis. I have had colonoscopies to rule out Cohn’s disease. I have had doctor after doctor tell me they can find no reason for my pain. Because I am a nurse they all assume that I am drug seeking. I dealt with the pain scared to take pain meds for over 3 years because I was afraid of everyone thinking I just wanted drugs. I have a non-existent sex life due to pain, numbness, return of SUI, and non- functioning sex drive. I mean how can you even think about sex when you are worried you will piss on your partner. How can you think about sex when everything is numb and you feel worthless and cheap. How do you tell your spouse that you can’t feel anything? How do you tell your spouse that you hurt too bad to even be touched? There are days when it hurts for my clothes to even touch me. How do you tell your children that it hurts to hug them? how do you tell your 10 month old grandson that it hurts to hold him, to hug him, to rock him to sleep like you have every night since he came home from the hospital? How do you explain to your family that you are too tired to go to the lake? How do you tell your daughter that you are too sore to stay the entire game and will miss her halftime band performance? How do you tell your daughter that you can’t play your flute beside her during the homecoming game because you hurt too bad? How do you tell your daughter that you hurt too bad to go to her band concert? How do you tell your daughter that you hurt so bad you can’t get out of bed because you sat in the basketball stands for 2 hours the day before? How do you tell your children that you hurt so bad you can’t take another step? How do you tell your husband that you hurt so bad you can’t even stand his touch? I take 17 different medications a day and still hurt so bad that I can’t enjoy life. I have been diagnosed with fibromyalgia. When doctors hear that word they immediately start to treat you like a drug seeker. They won’t listen to anything you say after that and no matter what is wrong with you they write it off as fibromyalgia. All the doctor’s want to do is shove another pill at you. I don’t know how many times I have asked doctors to please help me and have said that I don’t want another pill it’s just like putting a band aid on a hemorrhage! I had a doctor Friday tell me that fibromyalgia was what doctors diagnose you with when you say you are in pain and there is no clinical reason you should be hurting. I have spent the last 7 years in hell with no way out. I lost my job and subsequently my health insurance. I have been forced to file for disability at 39 years old. There are some days I can’t even get out of bed. I have mesh protruding through my vaginal wall. I pull bits of it out through sores from time to time. I am taking care of my ill spouse who passes out without warning, my 2 daughters one 21 in an ugly divorce the other 17 in her senior year of high school, my 10 month old grandson, and my lifetime friend who is a paraplegic from a 3-wheeler accident. I don’t have time to be sick or not get up every day. I contacted a lawyer about 2 years ago and after the initial contact only called to check when I had the time and they have just now gotten my medical records. I was directed to this site by the law firm. Something kept at me to visit this site. I went to it on Friday afternoon and learned that this mesh might be to blame for everything that has happened to my body and all my pain. I don’t even know how to feel really. I am angry yes! I have missed out on so much in my children’s lives that will never happen again! I have a nonexistent intimate relationship with my spouse. I am missing so much of my grandbaby’s life. I am VERY angry! I am also angry that as a medical professional I have in a sense lied to countless women that I cared for and told them all they were going to be fine even better than fine. I don’t have health insurance and have no idea even where to start with all this. I called a urologist Friday and their office had already closed so I will have to try again on Monday. I have missed so much of my life. You ask if we are angry… HELL YES WE ARE ANGRY!!! we have been lied to, discredited, talked down to, laughed at, told we were crazy! When I die I don’t have to worry about heaven or hell because I have done my time in hell and unfortunately my journey has not even really began.
I mean who is going to apologize to my family? Who is going to bring my family out of financial ruin? Who is going to restore my health? Who is going to replace all those memories I missed out on? Who is going to explain to my family why all this has happened and how to deal with it? Who is going to heal my body? Who is going to explain to me why this happened to me?
I just pray for justice for all those that lied and continue to lie to people saying this is safe. I pray for full and speedy recoveries for all those who are victims and for their families as well. I pray for understanding for all those involved. I pray for strength and courage as I begin my journey. All we really have left to do is pray!
I don’t know if any of these ailments or illnesses are related to my mesh. I haven’t had any opportunity to go to a doctor and I don’t even know where to start. I don’t even know what mesh is in me. I don’t even know where to start. I have the name of a Urologist, but I have no idea if he will even see me. I am just so lost I don’t even know which way is up to be honest. I have so many different questions in my head I just feel lost! Anyone who might know even where to start, please help!?!”
I feel so deeply for this woman because there are so many young women who are just like her. The sad part is she has lost her career and her health insurance. The terrible part is even if she did have insurance, urologists refuse patients like us. We are a liability. I wish she had access to UCLA’s wonderful doctors. I know a woman her age who struggle through many months of waiting to get removal by Dr. Raz very recently and when she got home, the deep tissue infection still plagued her. However after IV antibiotics, she had, has at last improved her infection issue and is able to function again with her family.
If anyone out there believes this is an older woman’s problem you would be so wrong. Thousands of young, courageous women suffer every day feeling there is no hope for them. I don’t want them to give up. I don’t want this to be for no reason at all. Our lives are worth far more than this. I hope you will show this woman love and caring and leave her a message. Thank you.
Update. For new information click here. http://meshangels.com/2014/04/mesh-will-i-get-complications-in-the-future/